Weathering the storm with children who have chronic illnesses

As Boston prepares for Hurricane Sandy, many people are buying last minute supplies: canned goods, water and extra batteries.  But for families with chronically ill children, disaster preparedness is more complicated. Many of these children require steady access to medication, clean water, electricity and often need significant help getting from place to place, so having a strategy in place to provide those items after a catastrophe can be crucial.

“The immediate loss of support resources for kids with medical needs is the biggest obstacle these children and their families face after a disaster,” says John Murray, PhD, RN, CPNP, CS, FAAN, director of Nursing Research in Surgical Programs and the Emergency Department at Boston Children’s Hospital. “Families should be prepared for the worst case scenarios. That way, if they do happen, they won’t be caught completely off guard.”

Disaster plans should cover the basics like safe meeting spots and access to stored supplies, but should also address the specific needs of chronically ill children, like having access to electricity that can run a respirator or having plenty of water to clean feeding tubes. To be best prepared, Murray suggests parents call local electricity and water providers, alert them to your family’s specific situation and ask about their emergency support services. This is especially important for electrical devices, as power outages can go on for some time after larger-scale disasters. “If your child needs steady access devices requiring electricity, you need to have a back up generator in case there’s a prolonged blackout,” he says. “Your local electric company or organization that supplies your medical equipment should be able to provide you with one based on your child’s needs.”

If your child needs steady access devices requiring electricity, you need to have a back up generator in case there’s a prolonged blackout.

Murray also suggests having an emergency information form that contains contact information for medical providers, friends and family, which could be incredibly important if parents and children are separated after a disaster. Depending on the child’s needs, detailed information about his condition and care should also be readily available. For instance, instructions on medicine dosage or techniques for managing a breathing tube may be particularly useful if the parent and child are separated after disaster strikes.

“Try to make the instructions succinct, because you don’t know under what situation they’ll be needed,” he says. “It’s possible the person reading them won’t be used to this type of situation or have access to everything you normally would. The notes in your disaster kit should take account of that.”

(Click for a copy of the American Academy of Pediatrics Emergency Information for Children with Special Needs Form, or create your own based on your child’s requirements.)

It’s also important to remember that major disasters can cause young children significant stress. To help alleviate some of their worry, you might consider involving your children in the creation of your family’s disaster preparedness. Engaging them in activates like trips to the grocery store to buy emergency supplies, or showing them how you contacted power companies to alert them to your family’s particular medical situation, can be empowering and help them feel safer. (Read our expert’s tips on lessening anxiety in children worried about natural disasters.)

“Knowing there is a disaster preparedness plan in place is going to help relive a lot of stress for kids,” Murray says. “Having them be involved with the preparation just drives home the point that your family is ready should something happen.”